The following case study is written by Irina Germanova Sumarokova, director of Nizhniy Novgorod Regional Charity of Parents of Visually Impaired “Perspektiva.”

Establish a model of early intervention center for providing permanent medical, social psychological and pedagogic services for families with blind or visually impaired children in Nizhniy Novgorod

Irina Germanovna Sumarokova
Director
Nizhniy Novgorod Regional Charity of Parents of Visually Impaired “Perspektiva”
Nizhniy Novgorod
28 M.Pokrovskaya St
Russia
7 8312 333402
Email: irasu at sandy dot ru
(The above email address should use the @ at sign in place of the word “at,” and an actual dot . in place of the word “dot”, all spelled as one word.)

Raising a blind of visually impaired preschool child now days is a big challenge. Because of limited sensor system and lack of information about how things happen in the world, blind and visually impaired children have special needs caused by physical and psychological development, and process of social psychological adjustment to now day’s life. From the birth blind or visually impaired child needs special care aimed to form compensatory mechanism and attitude towards the world. If these problems are successfully solved in preschool ages blind and visually impaired children better integrate in community, have better private and social life, better social and psychological well-being, also for this children it is easier to get good education and profession.

Now days the number of blind and visually impaired children is increasingly growing. The situation is worsened by fact, that last few years as a result of medical successes in nursing of premature newborn children a number of multi-disabled children with blindness increased too.

In spite of increasing number of these children in most of Russian cities there are no preschool institutions for blind children. There are institutions that work with children with amblyopic and strabismus. Absence of Systematic approach to preschool education of blind and visually impaired children exclude children of this category from preschool education process. Because of this now blind children are raised isolated by parents who do not know ways and perspectives of development of such children. As a result of incompetent pedagogic influence accrue strong developmental lag (physical and psychological) compared to their sighted peers that badly influences their educational process and farther lives of these children.

The worst situation is with multi-disabled children. According to “Children’s rights declaration each child regardless of disability has a right to education in conformity with his abilities and needs. But special educational institutions cannot fully meet these children’s needs. Multi-disabled children need to have more influence than just blind children. Because of all reasons above establishing an affective system of medical, social, psychological help for families with blind, visually impaired and multi-disabled children is very important for Russia.

Russian and foreign experience shows that the most effective model of this system is center of early intervention, where psychologists and teachers are working in close contact with parents. In European countries and in the US gained positive experience of work of such centers. This experience shows that rehabilitation work done in preschool ages enables them late to integrate in society and allows to decrease the difference in physical and psychological development of blind and visually impaired children from other children in preschool ages.

In Russia there is Municipal early intervention center in St. Petersburg. Parents of blind children and multi-disabled children get medical, social, psychological and pedagogic help there. Unfortunately current economic conditions do not allow local government in others Russian districts to give funds for such organization. In this situation the idea of establishing early intervention centers in big cities of Russia on the basis of NGOs becomes significant.

In Nizhniy Novgorod the early intervention center was established on the basis of Nizhniy Novgorod society of parents of visually impaired and blind children «perspektiva» on November 4 in 2003. It happened in process of activities in project «Developing and inventing a model of early intervention center for blind and visually impaired children» that was implemented by Perspektiva in partnership with Saratov regional organization of All-Russian society of blind and Blind Babies Foundation (San Francisco) from September 1 2003 to September 31 2004. I would like a few words about this organization.

Nizhniy Novgorod Regional Charity of Parents of Visually Impaired “Perspekiva” was officially registered on 24 of October 2001. The main aims of its activity are:

• To develop the appropriate environment for successful social rehabilitation of blind and visually impaired and multi-handicapped preschool children;

• To promote the ideas of social integration of the visually impaired children in media;

• The main directions of Perspektiva’s activity are:

• Creating a database of blind and visually impaired children, and children with multi-disabilities as well;

• Information support of families, having children with the described problems;

• Consulting parents on their rights and rehabilitation of their children;

• Providing the families with tactile books, toys and games;

• Organizing activities and events, helping to integrate these children into society.

As organization Perspectiva appeared during the Russian-British project “in contact with a family” financed by CAF implemented by Moscow foundation of parents of blind children, Parents from Nizhniy Novgorod participated in it. Perspectiva is the only organization working with blind babies in Nizhniy Novgorod. Since there are no special educational institution for blind, visually impaired and multi-disabled children in Nizhniy Novgorod the main goal for “Perspektiva” now is to establish a center of social and psychological rehabilitation of blind and visually impaired children (early intervention center). At the end of 2001 organization initiated creation of such center and was supported by city administration of Nizhniy Novgorod. City administration gave “Perspektiva” room for it.

Center was equipped with materials needed in development of blind and visually impaired children: Trampoline, dry water pool, Tunnel, Furniture for children, Set of apparatuses for children, Floor mats, Montessori special equipment. In Center there are a lot of tactile books, special toys, special adapted table games. The special crawling room was made for working with multidisabled children who cannot walk.

The main goals of our center – to promote continuous patronage of blind and visually impaired children from the moment of diagnose till they gain satisfying social status. Early intervention center’s activity includes two main aspects: work with parents (mothers, fathers, other family members) and work with children.

Work with parents include:
• Legal education aimed to raise awareness of parents about their rights;
• Teaching skills of competent pedagogic influence of such children;
• Their social and psychological rehabilitation.

Work with children is based on generalized innovative Russian and foreign experience in this area. In this center the main activities are:

Rehabilitation classes with blind and visually impaired children and their parents- Children come for such lessons 1-3 times a week depending on their needs. During these lessons children obtain communication, self-serving, orientation skills, learn to play, develop their movements and motor skills of hands. Preschoolers are preparing for going to school. There are individual and small group lessons. Parents attend these lessons too; there they learn how to develop their blind and visually impaired children.

Consultations for parents on medical, psychological and pedagogic issues. These consultations were available in the centers, at home and by phone. Some parents of children with insignificant visual impairments that do not lead to disability came to the centers for one-time consultations on determining developmental level of their children and about saving and developing vision. Parents of children with serious disorders usually needed to come to the centers for consultations a lot of times. Such families need permanent psychological and pedagogic assistance. Centers provide this kind of assistance for such parents.

Teaching parents of blind and visually impaired children skills, needed for competent development of their children, – parents receive educational films and brochures; also seminars for parents are organized. Films are very popular, because parents get visual information that they can use with their children in daily routines. Center started to collect films on early intervention for blind and visually impaired children. With help of Blind Babies Foundation now Nizhniy Novgorod center have 8 films, 3 of them were subtitled wit Russian subtitles. «Perspektiva» made 2 films. Also “Perspektiva” produced 8 brochures for parents. The goal of seminars for parents is to introduce parents of visually impaired children to different methods of developing such children. The programs of seminars are very rich. They include different trainings for parents: creating developing environment for blind child at home, teaching blind children orientation and mobility skills, teaching self-help skills, developing other senses…

Besides functioning as educators centers started to organize vocational activities for children and their parents. We think that such activities will improve understanding and collaboration among families and will help children to learn practical skills better. For example, every year we organize New Year parties, mother’s day and «birthdays» day when all children get presents.

Many affords were made in order to improve system of revealing blind and visually impaired infants toddlers and preschoolers and involve their families in the project activities. In order to do this, partners established partnerships with governmental authorities, in particular those working with social security, health and education issues. As a result of this work database on such children was created and it continues to grow.

To disseminate information about early intervention center «Perspektiva» produced colorful fliers with information about the center. These fliers are distributed to parents of visually impaired children through kindergartens that have special groups for such children, social security departments and medical-social expertise agencies, where parents of children who get official status of disabled get flier with recommendation to apply for help to early intervention centers. Fliers are also disseminated through pediatric ophthalmologists at clinics for children.

Nizhniy Novgorod center’s activity is based on American experience. Three project staff members went to San Francisco to learn more about experience of Blind Babies Foundation in early intervention work with blind and visually impaired children and their families in order to use this experience in Russia. During that trip we learned experience of American partner in providing early intervention services for families of blind and visually impaired children. Because of diverse program of the trip we could see how American methods of developing blind and visually impaired children work on practice. We were able to see different agencies that provide help and education for such children, to learn a lot about work of Blind Babies Foundation and see how it is organized. Together with unique experience we got a lot of printed materials on early intervention for blind and visually impaired children and multydisabled children and 6 videos for parents with practical information. These materials are translated and used by in Nizhniy Novgorod center’s activities.

We found very useful work of home counselors, who provide home visits to families of blind and visually impaired children. We think that this experience will be very important for Russian early intervention centers. This method of working will allow us to involve much more families, since not all of the families are able to come to the centers for help. Home counselors also could help to involve families at social risk, now it is very challenging to have a contact with them. Coming back to Russia we discussed this ideas with governmental authorities and this year we got some money for establish the center of home visits of blind and visually impaired babies. In May we are starting this program. It is Wonderful result of our work.

Establishing early intervention centers on the basis of “Perspektiva” in Nizhniy Novgorod solve a problem of preschool development of blind and visually impaired children. This experience is useful for other regions of Russia and other countries that are developed. It also will allow equal opportunities for blind children at schools, and will be a precondition for inventing the model of inclusive education for blind children in Russia.

I received a copy of this case study via an email listserv called the Disability Information Dissemination Network, managed by the Centre for Services and Information on Disability (CSID) and sponsored by Sightsavers International. You can subscribe to CSID free email distribution list by sending an email to either csid@bdmail.net or to csid@bdonline.com and putting the word “join” in the subject line.

i’m an occupational therapist from jordan, i
have worked recently with blind babies and yes it
its a challenge for everyone, in my country we
lack centers that provide early intervention
servies for this kind of diability which makes
things worser :(

Iam so interested of helping blind kids, as i worked with them as volunteer for 3 years, but i need to know a lot of things so that i can really help them trying to make their future better,need to know how to be qualified to teach blind kids

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